I can not tolerate some probiotics either, but some of them hugely helped with GI issues. The two, which helped most were VSL 3 and Swanson´s Ultra formula with 66 billions of bacteria. I had initial die off symptoms from them, which lasted 2 or 3 days and then apparent improvement. No diarhea from longterm antibiotics now.

I have run into a naturopath/alternative healing bias to just say "leaky gut" as if that explains any kind of IBS a person may have. Also the assumption that if you eat any food long enough, and have a leaky gut, your body will begin to develop "allergies" or an immune response to that food. Remedies they would suggest abound but none of them seem to be things I can tolerate. For example I tried glutamine which is supposed to help rebuild your intestinal lining, but my stomach rebelled.

With that said, traditional Western medicine helped me no more than the alternative side of the house. Full scoping and biopsies from both ends produced the IBS diagnosis, which the Gastro Dr. said to me is "what we call it when your guts are a mess but we don't know what's wrong with you." Brilliant.

I have to say it was -- and I mean this without irony -- validating and confirming to find this board and that gut involvement is in fact a common issue for ME/CFS folks. Still sifting through this section on what people do to try to mitigate that. I've already eliminated all sugars, carbs almost entirely, almost all nuts/seeds, all milk/cheese, and while each of those steps helped in the stages when I removed the food items, my digestion over all has not been improving lately. I'm at the point of needing to add things back rather than take away.

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Sorry to hear you're not getting the expected improvements, Sparrowhawk. Two things occur to me as possible reasons:

1. Have you eliminated gluten?
2. Are you pacing and resting rigorously?

Over-exertion can probably cause gut problems by causing hyperlactaemia - an excess of lactic acid/lactate in the blood, which will then make it hard for the gut to attain the correct pH. The wrong pH will mean the wrong gut bacteria.

I always get a worsening of gut symptoms as part of PEM after over-exertion, despite the leaky-gut/alkalising diet. It's important to do both the diet and the pacing.

Unfortunately, more than just gluten can irritate leaky gut. And once the gut is damaged, the gut can reject ANY food and one can become intolerant to anything: pathogens or even foods that are healthy. The allergenic foods that can do major damage to the gut in their own right are: ALL grains, soy, ALL legumes, dairy, nightshades. Any dense protein such as any meat can cause an autoimmune response if gut is trying to heal. Broths, esp. bone broths are the best food for healing. I notice I feel best when I stop eating and just fast on the broths. But of course one can't live like this. Liquid foods such as raw unsweet fruit/veggie smoothies at first then working up to simple veggie dishes plus fermented foods such as kefir and cultured coconut milk, and good fats. But one ALSO has to kill the pathogens that are wreaking havoc in your damaged intestinal environment. Oral Nystatin, olive leaf and garlic are good fighters. One also has to heal inflammation and restore nutritional levels to optimum for hormonal responses to intiatate healing too- esp. Mg levels. Having a good doctor helps. This is the process I am going through right now and so far I am having a difficult time, but VERY good success- the best so far in fact in 15 years! Will keep you posted.

Adlyfrost So it sounds like you are working with a good Dr. that understands gut health -- if you're not willing to mention them here could you PM me? None I've worked with so far seem to be able to address this at the level you just outlined, although one did mention Olive Leaf. Many thanks.

I have a good doctor but I won't be able to afford her until January. 99% of what I am doing is from my own research. The doctor I will be using is Dr Sangeeta Patti in Orlando FL. My daughter goes to her and I have been to her once 2 years ago. She really believes in her patients. She trusts their intuition. And she is a wonderful patient, kind-hearted human being. She does restorative medicine and helps one come up to optimum levels of hormones with nutrition and supplements.

But that would not address my autoimmune problems. Only ELIMINATING foods and broth/smoothie/juice regimens do that. Also, killing pathogens that create autoimmune response. Dr Patti will respect my course of treatment and help me. But I will still basically be still my own doctor- I mean who better than me? No one else has the time to study my health 24/7 as well as I do.

There are some dr's out there that will test your gut for pathogens, which may be helpful. I know my three biggies are yeast, enteroviruses (nystatin actually helps BOTH- even viruses) and parasite overgrowth. It is a long story how I know- but I do. My gut actually does a good job of fighting them when I get all my ducks in a row. But it still needs help. Keep you posted on the best treatments.

I will be using Dr Patti for nutrional testing and advice about supplements, toxin testing and anything that can inhibit the healing process. The leaky gut stuff I have read about everywhere on my own. I have been experimenting with it over the last 15 years trying to put everything together like pieces of a puzzle. Ameer Rosic is a nutrionist on youtube. He has excellent, easy to understand videos that I have found very helpful on leaky gut and hormones and autoimmune responses to food. He is definitely worth checking out! Dr. Chia's research / videos were a big breakthrough too- esp. when I was very sick.

Adlyfrost
Have you ever taken the mannitol-lactulose test for leaky gut, to (a) check that you have a leaky gut, and (b) see if your dietary interventions do indeed reduce gut leakiness? I wanted to take such mannitol-lactulose test myself, before and after my supplement interventions, in order to be scientific. But in the end I decided I did not want to spend money on taking two such tests.

Hip : I will definately consider the test when I have better insurance in January, thanks.

Right now I go by two indicators:
1) tongue. I have had geographic tongue since I was 11 and it has only improved once in my life since then (after a horrible flu where I could eat or drink nothing but chicken broth for 3 weeks then had to follow up antibiotics with nystatin for thrush- my tongue became like a new born born baby's and my skin glowed. Then I started eating and never saw that again.) I believe the tongue in my case, mirrors my gut.
2) Herpes simplex sores on my lipsI just developed during an esp. cold winter in NJ this year. Since I have been working on my gut these have disappeared. Lysine, vitamin C, oregano oil-you name it- nothing got rid of them until I addressed my gut.
When I feel I have things under control it would be interesting to take that test though.

"I've already eliminated all sugars, carbs almost entirely, almost all nuts/seeds, all milk/cheese, and while each of those steps helped in the stages when I removed the food items, my digestion over all has not been improving lately. I'm at the point of needing to add things back rather than take away."Sparrowhawk : Not to sound redundant but in my experience, it takes ALOT of easy to digest PROTEIN to heal the gut. I liken it to people who have bariatric surgery- what does the doc put them on for 2 weeks? Nothing but liquid protein. That is why I am always talking about the broths. I take them as meals. Homemade ones with the bones are the best. There are ALOT of youtube videos where doctors will explain the loads of healing nutrition you get from them- (though I don't have the patience to cook them for 3 days like they do). For example, six hours on the stove or a day in the slow cooker is good enough for chicken broth, IMHO.
I feel the difference within a few days, as long as I stay on liquids for the first week or two. Last time I expected to lose tons of weight but it was funny- I didn't. I only lost inches from my stomach. It was so nourishing that I had no problem maintaining muscle mass. Good luck with everything you are doing!

I have a good doctor but I won't be able to afford her until January. 99% of what I am doing is from my own research. The doctor I will be using is Dr Sangeeta Patti in Orlando FL. My daughter goes to her and I have been to her once 2 years ago. She really believes in her patients. She trusts their intuition. And she is a wonderful patient, kind-hearted human being. She does restorative medicine and helps one come up to optimum levels of hormones with nutrition and supplements.

But that would not address my autoimmune problems. Only ELIMINATING foods and broth/smoothie/juice regimens do that. Also, killing pathogens that create autoimmune response. Dr Patti will respect my course of treatment and help me. But I will still basically be still my own doctor- I mean who better than me? No one else has the time to study my health 24/7 as well as I do.

There are some dr's out there that will test your gut for pathogens, which may be helpful. I know my three biggies are yeast, enteroviruses (nystatin actually helps BOTH- even viruses) and parasite overgrowth. It is a long story how I know- but I do. My gut actually does a good job of fighting them when I get all my ducks in a row. But it still needs help. Keep you posted on the best treatments.

I will be using Dr Patti for nutrional testing and advice about supplements, toxin testing and anything that can inhibit the healing process. The leaky gut stuff I have read about everywhere on my own. I have been experimenting with it over the last 15 years trying to put everything together like pieces of a puzzle. Ameer Rosic is a nutrionist on youtube. He has excellent, easy to understand videos that I have found very helpful on leaky gut and hormones and autoimmune responses to food. He is definitely worth checking out! Dr. Chia's research / videos were a big breakthrough too- esp. when I was very sick.

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Were did you find information that nystatin is effective against enterovirus ? A google search pulls up nothing.

Adlyfrost, when you do the bone broths, do you skim off all the fat or do you eat that too? I was bone brothing last summer when I think my pancreas just caved in, or I got h pylori, or something but it was really a mess and a long while before I could eat normally again and I lost a lot of weight. Sort of soured me on the whole broth thing. But I was eating all the broth fat, and doing coconut oil on the side, so I may have overshot what my lipase could handle. If you have an recipes you want to PM me -- or URL of a favorite, I'm up for trying it again. Thanks.

Sparrowhawk : So far just doing chicken ones. There is a big difference in the natural free range w/ no hormones or antibiotics and the conventional, and worth the extra money. The natural has practically no fat to skim of at all. The conventional- yes I most certainly skim of fat. But those hormones and antibtx are so bad for immunity and gut- I try stay away from them. Same thing goes for grassfed vs conventional. Good to drink plenty of quality veg / low sugar fruit smoothies or juices when I am hungry or craving- good for detoxification too and also keeps weight on. Esp. after initial 3-4 days. And eating something solid but soft, non-allergenic and easy to digest when I have to- otherwise my metabolism and hormones can drop too low. Bone broths should be just a short fast. I can only go long term if I am bed-ridden and can do without calories. Short-term they can do miracles but don't provide enough carbohydrates to fuel a normal person's day w/out adding a little plant carbs. Good luck!
My chicken broth recipe :
1. One Free range chicken, already cooked, skin off (you can often get them already rotisserie cooked at a health food store): ribcage, gizzards, heart and neck and any spongy looking organ meat discarded (because it ruins taste)
(Also anybody's left over chicken wings/bones are excellent to throw in or do alone because that rubbery cartilage on the end which is delicious and nutritious). Pull apart large chunks of meat.
2. Heaping Tbsp Italian herbs and 5+ Bay leaves, pink salt
3. A few baby carrots, a bunch of celery cut or chopped, 1-3 onions
Fill up large stock pot to cover carcass+ a little more, and cook on low boil 4-7 hours or until bones are soft or all rubbery cartilage is dissolved . Eat as it cooks and keep refilling water. Good weekend dish- can start drinking after one hour. Take on empty stomach. Ok to eat veggies. Eat meat only after it is mush, if you must. Soft cartilage are like noodles, yum! Enjoy!

This has an excellent/yummy explanation of the benefits of bone broths. Need to find a good butcher- want to find a knee like this! I will tweak the recipe and shorten the cooking time when I make this.

Is it a waste of time taking the leaky gut supplements if you feel you've got bacterial overgrowth? Do you need to get rid of that first?

Thanks

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That is what I was thinking also. I(Via recent testing)have a PPTU(Metametrix)parasite infection along with a heavy H.pylori infection. Over the last decade trying EVERY leaky gut(Documented via Lac/Man testing)supplement on the market and hypo allergenic diets etc NOTHING worked.

Recently specific Anti Parasitic/H. pylori herbs have made a difference dispite not following a hypo allergenic diet.

In my experience, the pathogens need to be eliminated first, before the GUT can heal.